Putting participants and study partners FIRST when clinical trials end early.

Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners ("dyads"). The multidisciplinary Participant Follow-Up Improvement in Research Studies and Trials (Participant FIRST) Work Group met throughout 2021. Its goals were to identify best practices for communicating with and supporting dyads affected by early trial stoppage. The Participant FIRST Work Group identified 17 key recommendations spanning the pre-trial, mid-trial, and post-trial periods. These focus on prospectively allocating sufficient resources for orderly closeout; developing dyad-centered communication plans; helping dyads build and maintain support networks; and, if a trial stops, informing dyads rapidly. Participants and study partners invest time, effort, and hope in their research participation. The research community should take intentional steps toward better communicating with and supporting participants when clinical trials end early. The Participant FIRST recommendations are a practical guide for embarking on that journey.

Expectations and Concerns of Older Adults With Cognitive Impairment About Their Relationship With Medical Providers: A Call for Therapeutic Alliances.

We sought to understand the expectations and concerns of older adults with cognitive impairment with regard to their relationship with medical providers. In particular, we observed whether study participants were involved in therapeutic alliances. Medical providers and patients create therapeutic alliances when they agree on the goals of the treatment and share a personal bond. Whereas such alliances have been studied in cancer research, little is known about therapeutic alliances in dementia research. Data were gathered in a qualitative study of 27 older adults with cognitive impairment and analyzed with narrative analysis. We introduce four case studies that illustrate the effects of having or missing a therapeutic alliance. Whereas the participant in the first case benefited from a therapeutic alliance, the other cases are marked by different experiences of abandonment. Findings suggest that interventions should concentrate on ways to enhance the relationship between medical providers and patients with cognitive impairment.

Difficulty and help with activities of daily living among older adults living alone with cognitive impairment.

INTRODUCTION: There is limited research on difficulties with activities of daily living (I/ADLs) among older adults living alone with cognitive impairment, including differences by race/ethnicity. METHODS: For U.S. Health and Retirement Study (2000-2014) participants aged 55+ living alone with cognitive impairment (4,666 individuals; 9,091 observations), we evaluated I/ADL difficulty and help. RESULTS: Among 4.3 million adults aged 55+ living alone with cognitive impairment, an estimated 46% reported an I/ADL difficulty; 72% reported not receiving help with an I/ADL. Women reported more difficulty than men. Compared to white women, black women were 22% more likely to report a difficulty without help, and Latina women were 36% more likely to report a difficulty with help. Among men, racial/ethnic differences in outcomes were not significant. Patterns of difficulty without help by race/ethnicity were similar among Medicaid beneficiaries. DISCUSSION: Findings call for targeted efforts to support older adults living alone with cognitive impairment.

Multi-cultural perspectives on group singing among diverse older adults.

Group choir singing has been shown to have health benefits for older adults. However, because most studies have included predominantly white participants, it is unknown whether findings generalize to older adults from more diverse backgrounds. This multi-site qualitative study assessed perceived benefits of group singing for socioeconomically and racially/ethnically diverse older adults. We interviewed 31 choir participants, 6 music professionals and 6 administrators involved in a large, cluster-randomized trial. We used content analysis to identify themes. Psychosocial engagement was most commonly reported, with six components: emotional well-being, self-esteem, self-confidence, social connection and support, decreased loneliness, and cultural identity and multi-cultural appreciation. A few reported cognitive and physical benefits. They also suggest that group singing among ethnically diverse older adults can have multiple psychosocial benefits and enhance a sense of cultural identity and appreciation of other cultures. These findings can help in selecting structured outcome measures for choir interventions.

Seeking a Sense of Belonging.

This article draws on investigations by its authors, and from American and Italian interventions to provide recommendations for decreasing social isolation in older adults for policy makers, researchers, and other professionals committed to supporting the improved social integration of older adults. The article argues that to mitigate social isolation it is critical to foster a sense of belonging (personal involvement in a system or environment so people feel they are an integral part of that system or environment). Suggestions are provided on how to leverage systematic interventions to foster isolated older adults' sense of belonging to their communities.

Psychosocial Influences on Disaster Preparedness in San Francisco Recipients of Home Care.

Disasters disproportionately impact certain segments of the population, including children, pregnant women, people living with disabilities and chronic conditions and those who are underserved and under-resourced. One of the most vulnerable groups includes the community-dwelling elderly. Post-disaster analyses indicate that these individuals have higher risk of disaster-related morbidity and mortality. They also have suboptimal levels of disaster preparedness in terms of their ability to shelter-in-place or evacuate to a shelter. The reasons for this have not been well characterized, although impaired health, financial limitations, and social isolation are believed to act as barriers to preparedness as well as to adaptability to changes in the environment both during and in the immediate aftermath of disasters. In order to identify strategies that address barriers to preparedness, we recently conducted a qualitative study of 50 elderly home care recipients living in San Francisco. Data were collected during in-home, in-person interviews using a semi-structured interview guide that included psychosocial constructs based on the social cognitive preparedness model and a new 13-item preparedness checklist. The mean preparedness score was 4.74 (max 13, range 1-11, SD. 2.11). Over 60 % of the participants reported that they had not made back-up plans for caregiver assistance during times of crisis, 74 % had not made plans for transportation to a shelter, 56 % lacked a back-up plan for electrical equipment in case of power outages, and 44 % had not prepared an emergency contacts list-the most basic element of preparedness. Impairments, disabilities, and resource limitations served as barriers to preparedness. Cognitive processes that underlie motivation and intentions for preparedness behaviors were lacking. There were limitations with respect to critical awareness of hazards (saliency), self-efficacy, outcome expectancy, and perceived responsibility. There was also a lack of trust in response agencies and authorities and a limited sense of community. Participants wanted to be prepared and welcomed training, but physical limitations kept many of them home bound. Training of home care aides, the provision of needed resources, and improved community outreach may be helpful in improving disaster outcomes in this vulnerable segment of the population.

A Tale of Two Cities: The Exploration of the Trieste Public Psychiatry Model in San Francisco.

According to the World Health Organization (WHO), the "Trieste model" of public psychiatry is one of the most progressive in the world. It was in Trieste, Italy, in the 1970s that the radical psychiatrist, Franco Basaglia, implemented his vision of anti-institutional, democratic psychiatry. The Trieste model put the suffering person-not his or her disorders-at the center of the health care system. The model, revolutionary in its time, began with the "negation" and "destruction" of the traditional mental asylum ('manicomio'). A novel community mental health system replaced the mental institution. To achieve this, the Trieste model promoted the social inclusion and full citizenship of users of mental health services. Trieste has been a collaborating center of the WHO for four decades with a goal of disseminating its practices across the world. This paper illustrates a recent attempt to determine whether the Trieste model could be translated to the city of San Francisco, California. This process revealed a number of obstacles to such a translation. Our hope is that a review of Basaglia's ideas, along with a discussion of the obstacles to their implementation, will facilitate efforts to foster the social integration of persons with mental disorders across the world.

Time to reinvent the science of dementia: the need for care and social integration.

OBJECTIVES: The increasing number of older adults with dementia is a large and growing public health problem. Alzheimer's disease, the prevailing form of dementia, is projected to quadruple worldwide. To date, the care and social integration of individuals with dementia is complicated by limited collaborations between biomedicine and other disciplines. The objective of this paper is therefore to reflect on the orientation of biomedicine with regard to the science of dementia, and to articulate a path for moving forward. METHODS: The authors drew upon, and expanded, the insights of an interdisciplinary, international workshop entitled 'Bioethics and the Science of Aging: The Case of Dementia' held in October 2012 at the University of California in Berkeley. RESULTS: The care of individuals with dementia compels solid interdisciplinary collaborations. There are several issues affecting the care of individuals with dementia: (1) an evolving definition of dementia; (2) the ambiguous benefits of the diagnosis of dementia; (3) ethical conflicts concerning consent processes and clinical trials; and (4) a limited understanding of the perspective of the person with dementia. CONCLUSION: We argue that it is time for a renewed dialogue between biomedicine and other disciplines -- particularly public health, the social sciences, the medical humanities and bioethics. This interdisciplinary dialogue would facilitate a process of self-reflection within biomedicine. This dialogue will also provide the foundation for equitable public health interventions and will further prioritize the values and preferences of individuals with dementia, as well as their care and social integration.

High-risk medication use among older adults with cognitive impairment living alone in the United States.

BACKGROUND: More than one-fourth of older adults with cognitive impairment (CI) live alone; these individuals often lack support for medication management and face a high risk of adverse drug events. We characterized the frequency and types of high-risk medications used by older adults with CI living alone and, for context, compared patterns with those in older adults with CI living with others. METHODS: This was a cross-sectional study of National Health and Aging Trends Study (NHATS) data and Medicare claims (2015-2017). We ascertained cognitive status from NHATS and medication use with Part D claims. We compared high-risk medication use (those with adverse cognitive effects or low tolerance for misuse) among older adults with CI living alone versus living with others using logistic regression models adjusted for demographic/clinical factors. RESULTS: The unweighted sample included 1569 older adults with CI, of whom 491 (weighted national estimate, 31%) were living alone. In the living-alone group, the mean age was 79.9 years and 66% were female, 64% reported managing medications on their own without difficulty, 14% reported managing medications on their own with difficulty, and 18% received total support with medication management. Older adults with CI living alone used a median of 5 medications (IQR, 3-8), 16% took ≥10 medications, and 46% took ≥1 high-risk medication (anticholinergic/sedating: 24%; opioid: 13%; anticoagulant: 10%; sulfonylurea: 10%; insulin: 9%). Compared with those living with others, the use of high-risk medications was similar (p > 0.05 for unadjusted/adjusted comparisons). Those living alone were more likely both to take at least one high-risk medication and not receive help with medication management: 34% in those living alone versus 23% living with others (p < 0.05 for unadjusted/adjusted comparisons). CONCLUSIONS: Older adults with CI living alone use many medications; nearly half use high-risk medications. Our findings can inform medication optimization interventions supporting this vulnerable population.

Clinical Outcomes and Cost-Effectiveness of Collaborative Dementia Care: A Secondary Analysis of a Cluster Randomized Clinical Trial.

Importance: Long-term evidence for the effectiveness and cost-effectiveness of collaborative dementia care management (CDCM) is lacking. Objective: To evaluate whether 6 months of CDCM is associated with improved patient clinical outcomes and caregiver burden and is cost-effective compared with usual care over 36 months. Design, Setting, and Participants: This was a prespecified secondary analysis of a general practitioner (GP)-based, cluster randomized, 2-arm clinical trial conducted in Germany from January 1, 2012, to December 31, 2014, with follow-up until March 31, 2018. Participants were aged 70 years or older, lived at home, and screened positive for dementia. Data were analyzed from March 2011 to March 2018. Intervention: The intervention group received CDCM, comprising a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia care collaborating with GPs and health care stakeholders over 6 months. The control group received usual care. Main Outcomes and Measures: Main outcomes were neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI]), caregiver burden (Berlin Inventory of Caregivers' Burden in Dementia [BIZA-D]), health-related quality of life (HRQOL, measured by the Quality of Life in Alzheimer Disease scale and 12-Item Short-Form Health Survey [SF-12]), antidementia drug treatment, potentially inappropriate medication, and cost-effectiveness (incremental cost per quality-adjusted life year [QALY]) over 36 months. Outcomes between groups were compared using multivariate regression models adjusted for baseline scores. Results: A total of 308 patients, of whom 221 (71.8%) received CDCM (mean [SD] age, 80.1 [5.3] years; 142 [64.3%] women) and 87 (28.2%) received usual care (mean [SD] age, 79.2 [4.5] years; 50 [57.5%] women), were included in the clinical effectiveness analyses, and 428 (303 [70.8%] CDCM, 125 [29.2%] usual care) were included in the cost-effectiveness analysis (which included 120 patients who had died). Participants receiving CDCM showed significantly fewer behavioral and psychological symptoms (adjusted mean difference [AMD] in NPI score, -10.26 [95% CI, -16.95 to -3.58]; P = .003; Cohen d, -0.78 [95% CI, -1.09 to -0.46]), better mental health (AMD in SF-12 Mental Component Summary score, 2.26 [95% CI, 0.31-4.21]; P = .02; Cohen d, 0.26 [95% CI, -0.11 to 0.51]), and lower caregiver burden (AMD in BIZA-D score, -0.59 [95% CI, -0.81 to -0.37]; P < .001; Cohen d, -0.71 [95% CI, -1.03 to -0.40]). There was no difference between the CDCM group and usual care group in use of antidementia drugs (adjusted odds ratio, 1.91 [95% CI, 0.96-3.77]; P = .07; Cramér V, 0.12) after 36 months. There was no association with overall HRQOL, physical health, or use of potentially inappropriate medication. The CDCM group gained QALYs (0.137 [95% CI, 0.000 to 0.274]; P = .049; Cohen d, 0.20 [95% CI, -0.09 to 0.40]) but had no significant increase in costs (437€ [-5438€ to 6313€] [US $476 (95% CI, -$5927 to $6881)]; P = .87; Cohen d, 0.07 [95% CI, -0.14 to 0.28]), resulting in a cost-effectiveness ratio of 3186€ (US $3472) per QALY. Cost-effectiveness was significantly better for patients living alone (CDCM dominated, with lower costs and more QALYs gained) than for those living with a caregiver (47 538€ [US $51 816] per QALY). Conclusions and Relevance: In this secondary analysis of a cluster randomized clinical trial, CDCM was associated with improved patient, caregiver, and health system-relevant outcomes over 36 months beyond the intervention period. Therefore, it should become a health policy priority to initiate translation of CDCM into routine care. Trial Registration: ClinicalTrials.gov Identifier: NCT01401582.

A Prospective Multicenter Longitudinal Analysis of Suicidal Ideation among Long-COVID-19 Patients.

Long coronavirus disease 19 (COVID-19) is an emerging multifaceted illness with the pathological hallmarks of chronic inflammation and neuropsychiatric symptoms. These pathologies have also been implicated in developing suicidal behaviors and suicidal ideation (SI). However, research addressing suicide risk in long COVID-19 is limited. In this prospective study, we aim to characterize SI development among long-COVID-19 patients and to determine the predictive power of inflammatory markers and long-COVID-19 symptoms-including those of psychiatric origin-for SI. During this prospective, longitudinal, multicenter study, healthy subjects and long-COVID-19 patients will be recruited from the University Hospital of Geneva, Switzerland, the University of Genova, the University of Rome "La Sapienza", and the University of San Francisco. Study participants will undergo a series of clinic visits over a follow-up period of 1 year for SI assessment. Baseline and SI-onset levels of inflammatory mediators in plasma samples, along with 12 long-COVID-19 features (post-exertional malaise, fatigue, brain fog, dizziness, gastrointestinal disturbance, palpitations, changes in sexual desire/capacity, loss/change of smell/taste, thirst, chronic cough, chest pain, and abnormal movements) will be collected for SI risk analysis. The proposed enrollment period is from 15 January 2024 to 15 January 2026 with targeted recruitment of 100 participants for each study group. The anticipated findings of this study are expected to provide important insights into suicide risk among long-COVID-19 patients and determine whether inflammation and psychiatric comorbidities are involved in the development of SI in these subjects. This could pave the way to more effective evidence-based suicide prevention approaches to address this emerging public health concern.

Should Artificial Intelligence Play a Role in Cultivating Social Connections Among Older Adults?

This article draws on 4 case studies from our group's research on older adults living alone in the United States and suggests how artificial intelligence (AI) applications can be used to foster meaningful social connections. This article also warns against ways in which AI applications can reduce physical connections and suggests how AI technology should be implemented to avoid this drawback.

A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro-meso-macro perspective.

Introduction: This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern-the underrepresentation of Latino persons in Alzheimer's disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework-the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment-which considers multi-level barriers and their impact on Latino trial recruitment. Methods: Based on a review of the peer-reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. Results: In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual- and family-level factors (micro-level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional- and policy-level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare-related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. Conclusion: Future scientific work should apply and test the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.

Perceptions of the Role of Living Alone in Providing Services to Patients With Cognitive Impairment.

Importance: The potential role of living alone in either facilitating or hampering access to and use of services for older adults with cognitive impairment is largely unknown. Specifically, it is critical to understand directly from health care and social services professionals how living alone creates barriers to the access and use of supportive health care and social services for racially and ethnically diverse patients with cognitive impairment. Objective: To identify the potential role of living alone in the access and use of health care and social services for diverse patients with cognitive impairment by investigating professionals' perceptions of caring for such patients who live alone in comparison with counterparts living with others. Design, Setting, and Participants: This qualitative study of 76 clinicians, social workers, and other professionals used semistructured interviews conducted between February 8, 2021, and June 8, 2022, with purposively sampled professionals providing services to diverse patients with cognitive impairment in Michigan, California, and Texas. Main Outcomes and Measures: Clinicians, social workers, and other professionals compared serving patients with cognitive impairment and living alone vs counterparts living with others. An inductive content analysis was used to analyze the interview transcripts. Results: A total of 76 professionals were interviewed (mean [SD] age, 49.3 [12.7] years); 59 were female (77.6%), 8 were Black or African American (11%), and 35 were White (46%). Participants included physicians, nurses, social workers, and home-care aides, for a total of 20 professions. Participants elucidated specific factors that made serving older adults living alone with cognitive impairment more challenging than serving counterparts living with others (eg, lacking an advocate, incomplete medical history, requiring difficult interventions), as well as factors associated with increased concerns when caring for older adults living alone with cognitive impairment, such as isolation and a crisis-dominated health care system. Participants also identified reasons for systematic unmet needs of older adults living alone with cognitive impairment for essential health care and social services, including policies limiting access and use to public home-care aides. Conclusions and Relevance: In this qualitative study of professionals' perspectives, findings suggest that living alone is a social determinant of health among patients with cognitive impairment owing to substantial barriers in access to services. Results raised considerable concerns about safety because the US health care system is not well equipped to address the unique needs of older adults living alone with cognitive impairment.

Understanding the concept of trust and other factors related to COVID-19 vaccine intentions among Black/African American older adults prior to vaccine development.

Background: Black/African Americans are receiving COVID-19 vaccines at much lower rates than whites. However, research is still evolving that explains why these vaccination rates are lower. The aim of this study was to examine the effects of the pandemic among older Black/African Americans, with an emphasis on trust and vaccine intention prior to vaccine development. Methods: Data were collected between July and September 2020 from 8 virtual focus groups in Detroit, MI and San Francisco Bay Area, CA with 33 older African Americans and 11 caregivers of older African Americans with cognitive impairment, supplemented by one virtual meeting with the project's Community Advisory Board. Inductive/deductive content analysis was used to identify themes. Results: Five major themes influenced the intention to be vaccinated: uncertainty, systemic abandonment, decrease in trust, resistance to vaccines, and opportunities for vaccination. The last theme, opportunities for vaccination, emerged as a result of interaction with our CAB while collecting project data after the vaccines were available which provided additional insights about potential opportunities that would promote the uptake of COVID-19 vaccination among older Black/African Americans. The results also include application of the themes to a multi-layer framework for understanding precarity and the development of an Integrated Logic Model for a Public Health Crisis. Conclusions: These findings suggest that trust and culturally relevant information need to be addressed immediately to accelerate vaccine uptake among older Black/African Americans. New initiatives are needed to foster trust and address systemic abandonment from all institutions. In addition, culturally relevant public health campaigns about vaccine uptake are needed. Thus, systemic issues need immediate attention to reduce health disparities associated with COVID-19.

Addressing Suicide Risk in Patients Living With Dementia During the COVID-19 Pandemic and Beyond.

Alzheimer's disease and related dementias (ADRD) are progressive illnesses characterized by decline in cognitive function that impairs performing daily activities. People with ADRD are at an increased risk of suicide, especially those who have comorbid mental health conditions, have specific types of ADRD, or have been recently diagnosed. The coronavirus disease 2019 (COVID-19) pandemic has increased the distress of people with ADRD, a population also at increased risk of contracting the COVID-19 virus. In this article, we draw on a case study and use the Interpersonal Theory of Suicide to help describe the association between ADRD and suicide risk. Secondly, we call for new strategies to mitigate suicide risk in people living with ADRD during and beyond the current pandemic by using lessons learned from cancer care. Our goal is not to dictate solutions but rather to start the conversation by outlining a framework for future research aimed at preventing death by suicide in people with ADRD. Specifically, we draw on the updated Framework for Developing and Evaluating Complex Interventions to reflect on the complexity of the issue and to break it down into achievable parts to reduce the risk of suicidal behavior (ideation, plans, attempts) in those living with ADRD.

Difficulties with Activities of Daily Living and Receipt of Care Among Older Adults with Cognitive Impairment: Differences Between Those Living Alone and Those Living with Others.

We compared the prevalence of reporting difficulty with basic and instrumental activities of daily living without help received for persons with cognitive impairment living alone versus those living with others. We used data on 13,782 community-dwelling participants aged 55+ with cognitive impairment in the Health and Retirement Study (2000-2016). Models were stratified by gender and race/ethnicity. Among cognitively impaired older adults, those living alone were more likely to report difficulty without help received than those living with others. Results were similar by gender and race/ethnicity. Providers and policymakers might focus their efforts on ensuring the adequate provision of home and community-based services for older adults living alone with cognitive impairment.

The Living Alone with Cognitive Impairment Project's Policy Advisory Group on Long-Term Services and Supports: Setting a Research Equity Agenda.

(1) Background: A United States national policy advisory group (PAG) was convened to identify barriers and facilitators to expand formal long-term services and support (LTSS) for people living alone with cognitive impairment (PLACI), with a focus on equitable access among diverse older adults. The PAG's insights will inform the research activities of the Living Alone with Cognitive Impairment Project, which is aimed at ensuring the equitable treatment of PLACI. (2) Methods: The PAG identified barriers and facilitators of providing effective and culturally relevant LTSS to PLACI via one-on-one meetings with researchers, followed by professionally facilitated discussions among themselves. (3) Results: The PAG identified three factors that were relevant to providing effective and culturally relevant LTSS to PLACI: (i) better characterization of PLACI, (ii) leveraging the diagnosis of cognitive impairment, and (iii) expanding and enhancing services. For each factor, the PAG identified barriers and facilitators, as well as directions for future research. (4) Conclusions: The barriers and facilitators the PAG identified inform an equity research agenda that will help inform policy change.

Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's disease and related dementias.

Introduction: Despite evidence that Hispanic/Latino populations are 1.5 times more likely than non-Latino Whites to develop Alzheimer's disease and related dementias (ADRD), Latinos are underrepresented in clinical trials testing treatments for ADRD. Data are needed on facilitators of ADRD clinical trial participation in Latinos. We leveraged in-depth qualitative methods to elucidate barriers and facilitators to participating in ADRD clinical trials in a large and diverse sample of Latinos; and to provide timely and actionable strategies to accelerate representation of Latinos in clinical trials on ADRD. Methods: Data were collected in California between January 2019 and June 2020 from 25 focus groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with Latino adults ages 50+ (n = 75), and eight with caregivers of Latino older adults with ADRD (n = 52). Twelve community-based organization administrators were also interviewed. Transcripts of FGs and interviews were entered into Atlas.ti software. Three independent team members analyzed the transcripts with inductive/deductive qualitative content analysis. We triangulated data from stakeholder groups across sites, we used collaborative coding, and used the Consolidated Criteria for Reporting Qualitative Research. Results: An overarching theme was a tension between wanting to learn more about ADRD and to participate in ADRD research but having limited awareness and opportunity. Five themes were identified: (1) remaining in limbo, (2) wanting information about ADRD, (3) wanting information on research about ADRD, (4) clearing researchers through trusted local organizations, and (5) practicing altruism through engagement in research opportunities. Discussion: To increase representation of Latino communities in clinical trials on ADRD, bilingual information and education on ADRD and clinical trials needs to be better disseminated. Also, working with trusted local, regional, and national organizations can increase participation. Importantly, Latino participation can increase when research teams demonstrate altruistic actions and inform participants of public health reasons requiring their involvement. HIGHLIGHTS: Participation in clinical trials on Alzheimer's disease and related dementias (ADRD) is limited among Latinos/Hispanics.Knowing the high prevalence of ADRD in Latinos increases willingness to participate.Observing altruism from researchers increases willingness to participate.Invitations from multiple organizations increases willingness to participate.Researchers should include public health reasons requiring Latinos' involvement.